Pain Relief and End of Life Care Needs Focus in India

The
concept of Pain and Palliative Care needs an urgent makeover among the general
public in India. Although most often associated with non-profit institutions
diligently serving the poor and the needy, recently even private healthcare
institutions have started incorporating it at their hospitals and are trying to
expand the reach of palliative care. At present only a very small fraction of patients and
families who can benefit from palliative care are able to get access to these
services but gradual progress is being made by individuals and organizations
working towards a common goal.

Medindia sat with Dr. Vivek Khemka, MD, who specializes in
Oncology and Palliative Medicine, and is visiting India from Phoenix,
Arizona in the USA. He is a life member of the Indian Association of Palliative
Care and is also executive director for the EPEC-India project in
addition to being part of several other international organizations working on
improving palliative care in India. Dr. Khemka observed that Palliative care in
India has made significant progress over the last two decades due to the
concerted efforts of several Indian and international organizations. Palliative
care is applicable in all healthcare settings from the home to clinics to
hospitals.

Q. You were instrumental in bringing an
education program in Palliative Care from Chicago with modifications to suit
the Indian scenario. How big is the need for Palliative Care here in India?

A. There were no comprehensive programs in Palliative Care when I studied
medicine in India in the 1980s and 90's except for a few centres in Kerala.
Significant progress has been made since then especially in Kerala which has
even become an example for many other countries. Individuals and organizations
in some states have learnt from the model there and have over a period of time
started their own programs adapting and modifying it to their local needs.

India has
one of the largest populations with cancers and other chronic diseases.
The need for palliative care services is huge and so is the gap but steady
progress is being made. There is still a still a huge need for palliative care
training in medical and nursing colleges in India. Palliative Care education is
gradually picking up in some urban areas in India thanks to the initiatives of
several Indian and international organizations. The Indian Association of
Palliative Care is an umbrella organization here in India and they have been
active in advancing palliative care education and services and also promoting
policy changes for the improvement of palliative care education and services.

Many people in India lack
healthcare awareness and have limited access to basic healthcare facilities, as
a result of which many people with cancer, HIV and other chronic disease and
disorders such as diabetes see a doctor only in the later stages when most of
the damage is already done.

With the spiraling number of
cases presenting with chronic diseases in the advanced stages in recent years,
providing pain relief and end of life care to suffering patients is a huge
challenge. Limitedavailability of opioids for pain relief adds
to the problem. Though India is the largest legal producer of morphine in the
world and provides most of the morphine for pain relief across the world our
own people here do not have adequate access to it due to restrictive
regulations. Some states have modified their regulations and some
progress is being made. There is a concerted effort being made to improve
things at the national level and some results are being seen slowly but with
time things will speed up.

I felt it was important to bring the EPEC program based at Northwestern
University, Chicago to India with the necessary socio-cultural and medical
adaptations that would enable its use for palliative care education in India.
Pallium India and the Education in Palliative and End-of-life Care (EPEC)
collaborated to "Indianise" the EPEC curriculum for use in India. Several
experts who are members of the Indian Association of Palliative Care and Indian
Society for Critical Care Medicine along with experts from the USA worked
together to adapt and expand the EPEC curriculum. The curriculum adaptation
process was supported through a grant from the Lance Armstrong Foundation. The
EPEC-India curriculum is now available free of cost to any institution that
wants to use it for education and training in palliative care.

Q.How
did you get interested in Palliative Medicine?

A. It
began during my post graduate training in general medicine in the USA where I
was exposed to palliative care and saw how much it can impact the lives of
patients and their families. My interest grew over time and I acquired further
training in the area. I realized that this was something I wanted to do for the
rest of my life and knowing the need for such services in India started
developing links with experts in India and the US. When I signed up for a
Fellowship in Pain and Palliative Medicine at Montefiore Medical Center in New
York, I was offered the option of traveling anywhere in the world for four
weeks to visit palliative care programs and I took the opportunity to travel
back to India. The International Association of Hospice and Palliative Care
supported me with a travelling fellowship and put me in touch with Dr. M. R.
Rajagopal at Pallium India. I headed to India to see the progress made in
Palliative care and to do some workshops for healthcare providers and to get
feedback on how I could contribute to the further development of the field in
India. I used the trip to spend time with Dr. Rajagopal and study the current
state of palliative care in India and to develop ways of improving and
strengthening available services through collaboration.

Q. Tell us about your trip to
India that formed part of your Fellowship program in Pain and Palliative
Medicine?

A. It was a great teaching and learning
experience for me as I visited different places in India providing a workshop on basic
training based upon the very effective US program, Education in Palliative and
End-of-Life Care (EPEC) curriculum. Dr. Linda Emanuel who is the principal of
the EPEC project in the US gave me permission to use and modify the curriculum.
Since I am an EPEC trainer and the curriculum is a simple and flexible model to
teach palliative care, I modified several modules for the Indian setting and
presented them at different places in India. Before I started I spent a few
days with Dr. Rajagopal learning about the Kerala model and got feedback from
him and his team on the EPEC curriculum. I then did a few workshops in Delhi,
Jaipur and Chennai and got further feedback on the curriculum.

Q. How far is India lagging
behind the West in advances in the field of Palliative care?

A. Even in the USA there is a huge gap between
the need for palliative care and the availability, although this is changing
fast. The kind of palliative care services offered in Canada, Western Europe
and Australia is unmatched in the US but it is catching up. More programs are
now in place to improve the quality of palliative care in the US. Yes, in India
most terminally ill patients lack access to palliative care but efforts are on
to change the situation. Progress has been made and India is ahead of many
Asian, African and South American countries. Kerala has made so much progress
that it is an example for several countries to follow. Several individuals,
institutions and organizations in India as well as several international
organizations such as WHO, International Association of Hospice
and Palliative Care, Help the Hospices, Indo-American Cancer Association, Jiv
Daya Foundation, International Network for Cancer Treatment and Research,
Cancer Relief India to name just a few, are collaborating to make progress in
the area. The Medical Council of India has recently in principle
approved a post-graduate MD program in palliative medicine and the final
notification is pending. This happened largely due to the efforts of several
individuals and organizations within India and this will bring about further improvement
in the field.

I have observed a lack of awareness about palliative care among the
general public and even among physicians and healthcare workers in India.
Palliative care programs are generally associated with charitable institutions
focusing on the poor, with most programs struggling for resources and funds to
survive. If we are able to improve awareness then these organizations can get
more support and help in improving their services. Kerala has a successful
model where extensive public awareness has resulted in significant improvement
in services.

Many professionals are hesitant to enter the field wondering where it
will lead them. On the other hand there are patients and families who can
afford to pay for services but have little access to them because the services
are not professionally streamlined. As I see it, improvement in availability of
palliative care services can be achieved through well co-ordinated effort in
India to mobilize awareness among the people and policy makers.

As society changes with time, more people have to go out of the house
to work. Since many people in India still abide by a closely knit family system
and prefer to care for a dear one at home who is elderly, sick or dying, making
palliative care services widely available would help us as a society and a
nation in caring for our near and dear ones with advanced illnesses.

Q. Even medical experts feel
the progress is gradual because Palliative Medicine is a Western concept and an
emerging field in India. Do you agree?

A. Palliative care as such is not a western
concept. It has been there for thousands of years in most civilizations in some
form or the other. Indian culture is a very caring and family centered culture and our
society has always had a tradition of caring for the sick and dying.
Dharamasalas that were built to care for sick and infirm are just one example.
With modern advances in healthcare many of those concepts were incorporated
into palliative care but compassion remains at the core of it all. We are still
a very caring and compassionate society even though in busy cities that may
have changed some due to the daily struggles people face.

Q. How can pain relief and end
of life care in India be improved?

A. Every individual has a right to life with
dignity. If we can make people aware that they are entitled to that and that
relief from pain and suffering is a basic human right, then society will make
the change that is needed, happen. An educated consumer is a powerful force for
change. We can try to mobilize the consumer by creating awareness on palliative
care in a simple and widespread way. Awareness leads to empowerment. Increased
public awareness will pave the way for rapid improvements in access and
availability to palliative care, because an educated consumer will know what he
or she wants and strive to get it soon. Palliative care is an essential part of
basic health care. Everyone has a right to basic healthcare.

Palliative care is not technology-intensive, doesn't involve high
capital cost and if we have the will, it is easily do-able because we have to
just organize and train ourselves to put to use our inherent human skills of
compassion and love of our fellow people to soothe a persons suffering from
pain and distress. A systematic blend of compassion and health intervention will bring
great relief to suffering patients and their families.It is
what any mother would do for her child and what we as a society owe to our
fellow humans.

I thank Medindia for this opportunity and the good work that you are
doing in increasing the awareness about palliative care among your readers. I
would also like to thank all the individuals and organizations here in India
and elsewhere who continue to humbly work so hard in this area. Things will
continue to improve with increasing awareness and resources and the media can
help as a catalyst for change.

Medindia
is initiating a series of Interviews and discussions with Support Groups and
cancer survivors to carry forward the urgent need to mobilize medical experts,
patients, their families, governmental agencies, NGOs entrepreneurs and
volunteers so that a solid base for palliative care is built in India. In a
world that is spinning so fast and everyone getting busier by the day, it is
important to reaffirm our duty and consolidate our efforts to relieve people of pain and continuously offer supportive treatment
and care.

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Thank you very much for focusing on such an important issue, and congratulations to Dr Vivek Khemka.
While I agree totally with what is presented here, just in case the title misleads any one, I must add that palliative care is not only about end-of-life care. All principles of palliative care must go hand-in-hand with disease-specific treatment whether or not a cure is possible.
M.R.Rajagopal MD

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